The ACA saved my life, and we’re about to lose it.

There’s a lot to say about the election of Trump to be our next President, and I’m going to say it all, soon. The thing that hitting me the most though, right this minute, is that if he succeeds in taking away the Affordable Care Act (aka “Obamacare”), I’ll lose my current insurance.

Congress already has a plan in place (from 2015) which would use the budget reconciliation process to gut the ACA with only a simple majority, which the Republicans have. No filibuster allowed; it’s over in one vote. From healthaffairs.org:

Both houses of Congress passed reconciliation legislation that would have repealed the premium tax credits; the small business tax credit; the individual mandate, the employer mandate; the expansion of Medicaid coverage for adults up to 138 percent of the federal poverty level, presumptive eligibility, maintenance of effort, and benchmark plans for Medicaid; and the ACA’s taxes—the medical device tax, insurer fee, “Cadillac” high cost plan tax, and tax increases imposed on the wealthy—most of the provisions that the public identifies as “Obamacare.”

Without the tax credits which would greatly reduce my payments for a different marketplace insurance — especially given my preexisting conditions — I can’t afford to buy a replacement. Trump’s proposals (Health Savings Accounts, insurers allowed to sell plans across state lines, imported medications from overseas, keeping your kids on it until 26) won’t help me at all.

As a freelancer — the only job I can hold while still caring for my son’s special needs — I don’t have employer coverage. I don’t make enough to put into an HSA. Buying from one insurance company vs another doesn’t mean the prices will be affordable; “affordable” for me is literally whatever I can avoid spending on food and heating gas for my apartment. I don’t have extra money for health insurance when the coverage I have is taken away.

I’ll be without.

Without the ACA-provided health insurance, I wouldn’t have been properly screened for my health issues this year. I wouldn’t have had surgery in June to remove part of my thyroid. They wouldn’t have discovered my cancer when it was still small and treatable.

If I hadn’t gotten health insurance through the marketplace this year, I wouldn’t be getting it next year under President Trump, and then maybe not for another 4 or 6 or 8 years after that.

I wouldn’t have survived that long with undetected cancer. The ACA saved my life. (And it was going to keep on saving my life by providing me with the health care I need to watch out for new cancer, the medication I need to manage my ADHD so I’m a more productive worker, and limiting the amount I spend out of pocket so I can still put a little food on the table.) That’s now in jeopardy.

I have to figure out how to pay for new insurance when the time comes because I need it. I have to survive this vile “leader” who doesn’t care if I live or die. So, I’m already planning and budgeting for a future under Trump.

If you want to, and can, help, please consider:

Thank you.

 

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Medical Update, or, So That’s What Happens When Your Blood Doesn’t Get Oxygen

Tl;dr: I have severe iron-deficiency anemia that went undiagnosed for the last couple of years. I not only don’t have enough iron in my blood, I lack ferritin, the protein that allows your body to store iron. Because my body won’t reserve enough iron from meals, I have to take in new iron every single day, and will for as long as I live, if I want to keep, you know, living.

After losing my health insurance along with being laid off last year, I got new health insurance in 2016 (thanks, Obamacare!) and last week, got into a new doctor’s office. I knew, before I went, that I was going to want to talk about my health and the way I’d felt it was going downhill the last couple of years. I’d done a lot of hard work to get in shape, to eat healthier, and I was getting there. Two years ago I was only 40 pounds away from my goal, and expected to be there by the end of 2014. I was walking an average of 5 miles a day, doing cardio and yoga and lifting a little free weight at home, starting to buy clothes I really liked to wear. Then, it all sort of fell apart. I was exhausted, constantly, sometimes sleeping 10 hours and then still having to take a nap in the afternoon. I started to be short of breath. I stopped walking so much. My skin got dry; my nails became ridged and brittle, and my hair started to tangle easily, even when it was short, to the point that I kept it tied up or under a hat most of the time. The dark circles under my eyes got worse. I was struggling to do everyday things. I got dizzy when I stood up too fast, and sometimes my fingers tingled like they were asleep. My hands and feet were very cold, and I noticed I was turning the heat on more than before.

I’d also talked to my old doctor about the same symptoms and his response was literally, “You’re getting older, so you’re just going to have to get used to that.” That didn’t seem right to me so I insisted, in a followup appointment, that no, really, there’s something wrong. Old doctor then said I was probably pre-menopausal, at 41, with no family history of that. I said it didn’t seem likely, so he ran tests, and found that no, that wasn’t my problem. He told me then to sleep more (I was already sleeping too much). He said I was probably depressed. (No. I’ve seen a therapist when I’ve felt I needed it before, and I wasn’t afraid to do so again. That wasn’t the problem.) He said I needed to eat better and exercise more and, again, to just accept that I was slowing down because I was a woman, and I was getting older.

The last appointment with him was a year ago. Knowing I had a chance to get the new doctor to maybe pay attention to my concerns, the night before my appointment I sat down and wrote out my medical history, and every symptom I had now. I printed out my calorie intake, sleep, and exercise logs from my fitness tracker.

When I went in to the office, two things happened:

  1. New doctor saw right away that I hadn’t been sent in for a followup thyroid ultrasound, even though it was in my file that I needed to get them every year or two after the (benign) nodule we found in 2013.
  2. He looked over my info, heard my frustrations, and promised to run every test we needed until we figured out the problem.

He took my vitals, and told me what he wanted to look for. My resting heart rate was 93 beats per minute, unusually fast, especially for someone who always felt sluggish. My lungs sounded clear, so it was unlikely an obstruction was the cause of me feeling short of breath. He asked if I’d always been so pale. He ordered labs. I fasted overnight and went back in the next morning, where they took 6 vials of my blood, to test for iron, and thyroid function, but also cholesterol, and various vitamin deficiencies. He added the test for ferritin, which I hadn’t heard of before.

And he let me know that my thyroid felt swollen and lumpy, a sure sign that I’d developed another thyroid nodule. We scheduled a sonogram for this week. (I’m hopeful it’s benign, like the last one; some people just develop these non-cancerous thyroid tumors without it affecting much else. My thyroid hormone levels came back okay, which is another good sign that the nodule is just annoying, and not dangerous.) But…

It turns out that I’m anemic in a big way. Like, wow, it’s impressive that I’m as healthy as I am, considering. I have very low hemoglobin, Mean Corpuscular Hemoglobin, Mean Corpuscular HGB Conc and very low serum ferritin scores. In addition to taking iron supplements, I’m also taking daily B12 to help with the absorption of iron. Unrelated, but my vitamin D levels were also so low that I was prescribed a mega dose to be taken once a week for 12 weeks, with a smaller daily dose thereafter. I live in the frozen north, so lots of folks around here have lower D levels than usual, but my doctor said, “If I tested everyone in town, 98% of them would have low D, and you’re at the bottom of that group.”

It’s going to take a while for everything to kick in, and we’re going to monitor it closely over the next few months to make certain my health improves. I’d always thought of anemia as you’re a little pale, go eat a steak and you’ll feel better. (This diagnosis might explain why eating a good cheeseburger really did make me feel great, for a few hours.) In my grandma’s time, people with serious chronic anemia used to develop pernicious anemia and then die, and I’m hoping to avoid that. These days, with medical care, it should be that I simply take a pill for what my body doesn’t have, and then I’ll be fine. I can do that.

But I’ll be damned if I let a doctor tell me I’m just a woman getting old, ever again.

The thing I never talk about: Thanksgiving, and eating disorders

Tomorrow is Thanksgiving, and for a lot of people, it’s a day of stress, struggle, fear, and self-hate that has nothing to do with our relatives. For people struggling with an eating disorder, the holidays – from now through Christmas – is the hardest part of the year.

You’re not alone.

I have had an eating disorder for more than twenty years. I don’t know exactly when it started, when I went from uninformed choices to bad habits to an actual disorder, but I realized I was doing unhealthy things, sometimes things I couldn’t control, when I was around 20 years old.

I’ve been thinking about this blog post for months. A couple of years ago, I decided to seek help for abnormal and unhealthy eating habits. I’ve had issues with food, beginning with not having learned what healthy eating was in the first place, all of my life. When did recovery start? When I wanted to change? When I got help? When I started making changes? I’m not certain I know.

I do know that I’m not recovered yet. Maybe, like alcoholics and other addicts, I will never be “cured”, only managed. As long as I’m healthy, that would be okay with me.

I am getting there, though. Gaining weight this year is actually, oddly, proof that I’m recovering. I’ve stopped doing all the things I did to lose weight, most importantly I’ve stopped thinking that not eating is the best way to lose weight. Most people think of extreme calorie restriction and anorexia as something you can easily identify: those girls who weigh 80 pounds and hide food in dresser drawers so their parents won’t know. That’s a face of it, certainly, but in adults it’s often unnoticed. We don’t have to hide food because no one is monitoring us. We can simply not eat.

Restricting is about control. Mix it with binge eating, which is usually about satisfaction, literally filling an emotional void with food, and you get what most people will write off as yo-yo dieting. It must be that I was trying to healthy (when I lost weight) and then stopped trying (when I gained it. Even thin, I wasn’t being good to myself. I’m healthier now, at my highest weight ever, than I was during the rest of my adult life.

I can say all of this now because I’m over the harder part. I’ve learnt to stop restricting, stop binging, stop weighing myself constantly, stop hating myself, stop hiding all of it. It took years. It took help, and support from someone who loves me no matter what.

The next step for me is taking the hearty, healthy food I eat now, and find the portion sizes that are right for my body. I overeat now, not too much, but enough that if I carried on the way I am, I wouldn’t lose much fat. As I get older, I worry about my knees, my heart – I worry that my fat is keeping me from activities I want to do, and of course I know it makes other people judge me. I want a career that isn’t marred by employers who equate overweight with lazy or unmotivated.

I’m ready to try but I’m nervous, too. Restricting my food at all makes me tempted to restrict it a lot more. It’s tempting to “just lose the weight fast, then worry about keeping it off”. It’s tempting to ditch the rich, flavorful meals we eat now for diet foods which don’t have calories, or nutrients, or the feeling of satisfaction that tells your brain it’s actually full. Or skip meals entirely. Make a game of it, a challenge, see how long you can go without eating, how little food you can eat, how fast you can force down the dial of the scale… Count every calorie, every step, every time you thought about food. And after a week of that, after dropping several pounds, isn’t it nice to “take the night off” and eat pizza, soda, snacks, anything and everything you’ve been craving? You can go back on the diet again tomorrow…

I’d rather be overweight than go back to that life.

I’ve told myself that a million times but for once, I know that I mean it.

Tomorrow, we’re cooking a big Thanksgiving dinner. It’s just the three of us, like it had been the last couple of years, and we’re making only the things we love best. I can’t promise that I won’t question my choices or feel regret that I indulged. I can promise that I’m going to focus on eating what I think I’ll actually enjoy, in a healthy portion, without restricting or binging. I’ll get some exercise. I’ll take it one day, one meal at a time.